Circulation

[lynnieb]

I have ET jak2-ve. I'm 53 and on aspirin with my platelets usually around 1300. The last 6/12 my circulation in my toes and fingers has been getting worse. My hands and feet get icy cold, blue, and sometimes even purple with a reduced capillary refill.

My haematologist says this is nothing to do with ET, but I've heard too many others with the same issues.

I'm not on meds as I have another condition which makes them reluctant to put me on anything. Anyone got any similar stories??

Peace and love to you all!

[EPguy]

If your Heam is right, (a good question) one non MPN possibility to check is Raynaud's Phenomenon. It's an autoimmune disease that normally affects the fingers most but can affect other areas.

Here is one site with some info on it:

hopkinsmedicine.org/health/...

[Mostew]

I connect those symptoms with ET as now my platelets are lower my fingers and toes are perfect colour ,despite freezing weather . Previously like yours .I recommend soaking in very warm water with rosemary oil . Or mustard powder .....

Have a kettle handy and keep topping up. Also massage with rosemary oil in coconut oil .

But as EPguy says could be something else .

Investigation needed

[lynnieb in reply to Mostew]

Thanks for that. I have been referred to vascular, but I have already been waiting for 3 months to even get an appt! Then they said it could be a year - so my tootsies might've fallen off by then!!

[jointpain]

Hello Lynnieb not knowing what your other condition is, I can only describe what my wife suffered before she had her Splenectomy and then diagnosis of MF Jak2+. She had for many years suffered from the blue purple toes especially when it was cold, though not always. She thought it was chill blains and took an aspirin to help with the pain. She'd take one full size aspirin every four days, which really helped. It was only after she was diagnosed with MF and on hydroxycarbamide and Anagrelide that we reckoned it was due to high platelets and or high red cells as she also would have a flushed red face out of nowhere at times, when previously it never happened. Not knowing what she had prior to being diagnosed with MF, we can only guess.

[lynnieb in reply to jointpain]

I also have neurofibromatosis, with multiple tumours on my nervous system. Thank you for your input

[Cat_lady52]

Hi Lynnieb, yep, I get purple / gray toes, only noticed it after diagnosed (ET, Carl 1) and I started on daily Aspirin and when it’s quite cold.

[hunter5582]

I experienced something similar in my feet/toes. My MPN Specialist calls this "PV Toes." People with MPNs experience erythromelalgia, which is most certainly a MPN related microvascular issue. As EPguy points out, you could also be experiencing something like Reynaud's or some other condition. Note that I experienced cold hands/feet when i became very iron deficient due to venesections.

Suggest that you consult with a MPN Specialist. MPNs are rare disorders and many doctors are not familiar with all the ways they can manifest. While what you are describing could be something else, it is consistent with an ET-related microvascular symptom. Given that you have very high platelets and appear to be symptomatic, it may be time for a different treatment plan. You need MPN expert input on this decision. Here is a list just in case you have not seen it. mpnforum.com/list-hem./

All the best.

[NewBloom]

Hi, I have PV and my platelets are under control. I have the cold fingers and toes and been diagnosed with primary Raynauds. My PV consultant is aware and wants to be notified of any changes. If any do occur I'll be referred back to a Rheumatologist. Raynauds is a bad circulation condition and common.

Try keeping your hands, feet and core area warm while you wait for your appointment. Supermarkets and Amazon sell disposable hand and feet warmers. I often use them.

Best wishes.

[Spanelmad]

While your waiting for an appointment try Nordic Socks merino wool and sheepskin slippers for the tootses that feel like they'll fall off.Hands light compression fingerless gloves helps with the circulation.

[Janlol]

Hi

I too have ET JAK positive and suffer terribly with my toes. I spoke with my haematologist about this who wasn’t too helpful then contacted the secretary of a rheumatologist near me who also understands MPN. She agreed to see me and now I am under her care and she communicates well with my haematologist regarding treatment. At the moment I have flolan infusions every 6 months to try and help with the pain /symptoms but these haven’t helped as much this winter and I’m currently suffering with a very painful purple toe which refuses to warm up!